Image: Rwangsa
This post is part of the “What Other Mums Do series” and also to respond to a couple of requests I have had from readers of the blog to include posts on living with children with special needs.
This post is from Marita who blogs at Stuff With Thing about life, the universe and autism. Mother of two kids on the autism spectrum, she wishes she could afford to keep her hair pink all the time. You can catch her on Twitter and Facebook as well.
I truly admire Marita’s approach to parenting. The thought she puts into small parenting tasks, that I don’t give a second thought to and her positive attitude towards her family and her life, when it would be very easy to dwell on the many challenges is quite inspiring. Today Marita is sharing a typical day in her life.
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3am I wake with a start, as always a little voice says ‘Don’t be scared Mama, is just me’ and Heidi (7yo) climbs into the bed. I slide over a little and cuddle her waiting till she is ready to tell me what has woken her this time.
“I hear-ded bats in da corridor”
“Was it really bats? Or did you think it was bats”
Even while I give my firmly based in reality answer, I wonder what depths of courage she must have had to find to make her way down the corridor to our bedroom. It is something I wonder at least twice a week.
“I know-ded it was Oz (the Cat), but I think-ded it was bats”
“So your imagination was scaring you?”
I hug her tight and she falls asleep while my arm goes numb and I’m grateful that tonight her sister didn’t wake also. Sometimes it is bats, other days Creepers (from Minecraft) or dinosaurs or people digging outside. Ever since that scary night earlier this year her sleep has become very unsettled.
My girls have trouble sleeping, falling asleep, staying asleep, and getting enough sleep. I’m grateful for the medication which keeps the girls sleeping during the night, prior to that it was rare for me to sleep more than 4 hours in a row any night. Now I managed 5-6 hours most nights.
6am the alarm goes off, signalling time for my husband to get out of bed. He takes Heidi with him and I get another 30 minutes of having the bed blissfully all to myself.
6.30am the alarm rings again, husband brings me a coffee in bed, I check my phone for emails and what is on today’s calendar.
7am alarm, time to wake Annie (9yo) and make sure husband is running on time. Heidi is happy to get dressed so she can have breakfast. I take a cup of tea and toast into Annie’s room to kick start her day on a positive note. Annie is too big to pick up and dress as you would a toddler, she is 9 years old and I need her to be compliant. If a little caffeinated tea and a bit of toast will give her the push to get out of bed then I’m going to take it. Today she has a psychologist appointment in the afternoon and she doesn’t want to go, they discuss difficult things in the psychs rooms, Annie doesn’t like that. I go on to making lunches, and grabbing more coffee.
7.30am the alarm rings again and husband is out the door to work and I’m trying to encourage Annie to get out of bed “A shower will help you wake up, make you feel better”. I want to scream with frustration “just get up already” but that will be counterproductive. Heidi has half eaten her breakfast and wandered away to play with her iPad, I get her back to the table, hide the iPad and drop the lunch boxes and school banking on the girls school bags. Back to getting Annie out of bed.
8am the alarm rings again. Annie is in the shower, Heidi has found her iPad. I take it away and ask Heidi where she is up to in her morning schedule; she goes to look and gets on to the next task. Annie decides she is staying home today, even though her appointment with the psych is not until lunch time. I remain firm “put on your school clothes” and hear Heidi talking to herself in the bathroom. She went to brush her teeth and got distracted playing with the bath toys. “Where are you up to on the schedule?” I ask, a phrase endlessly repeated on school mornings. There is yelling and some banging from Annie’s room; I leave her to work out her anger without an audience.
8.30am alarm, I tell Annie she has 15 minutes to put school clothes on, eat breakfast, brush her hair and teeth and then I’m leaving. Take the book away that Heidi is reading and ask where she is up to on her schedule, again. Time for me to get dressed and double check everything is in the school bags.
8.45am Annie has dressed herself and is shovelling down her breakfast. Heidi checks the schedule and remembers it is her show and tell day, she starts to panic, I remind her that we put something in her bag last night.
9.05am we get to school and I’m pretty happy, it was a good morning for us, no major meltdowns, everything the girls need for the day is in their bags and we are sort of on time.
I stop to talk to Heidi’s aide; something happened yesterday that Heidi doesn’t have the language to explain to me herself. We are distracted by Heidi who is working herself up to tears, she cannot find her epipen, turns out it is in my handbag, I put it there last night before we headed out to swimming. I’m glad it wasn’t in the swimming bag.
Then I head up to the school office to check on some Parent Club paperwork, I run into the school Counsellor on the way and we stop for a chat about Annie.
Before I know it the 11am bell for recess is ringing and I think I should head home and get my chores done. Annie spots me leaving the school office and comes to talk to me, she is very worried because someone has put meat sandwiches in the compost bin and they shouldn’t go there, I direct her to the yard duty teacher and make my way to the gate. I wave to Heidi who is playing by herself, near to a group of other children but still alone, she is happiest this way.
Once home I race around dishwasher, washing machine, clear the lounge/dining room floor so Robert the Roomba can do his job. Time for checking emails, facebook, twitter and getting some blogging in before I have to get going again.
1pm the phone beeps, time to go collect Annie for her psych appointment. I head back to school. The Principal comes out to say hello as I’m signing the early dismissal form for Annie, she shows me Annie’s book she fills in after recess and lunch reporting on who she played with and how the play went (happy, sad, angry, fun), Annie needs to fill this book in, without the information in writing she seems to only focus on the negative times of the day, even if it was a minor 5 minutes, in her mind it becomes the entire day.
I collect Annie and her bag and we head off for our appointment, Annie happy to be escaping school, but unhappy about the reason. We go via the shops and I buy Annie some sushi for lunch, this improves her mood, hungry child is cranky child.
At the psychologists office I sit in the waiting room and bask in the silence and the opportunity to do nothing at all for 45 minutes while Annie and the psych are in her room talking. Annie comes out at the end of her session, she is unhappy that once again she was not able to teach the psych about Minecraft, instead they talked about how your body feels when it is angry, the early warning signs. I can see those early warning signs building as I hand her my phone and suggest she have a quick game of Minecraft while I talk to the psych. We quickly discuss strategies, and then it is time to pay the bill, make our appointment for next fortnight and go back to school.
3pm I pull into the school carpark, Annie opens her door, looks at me and says “sometimes I feel like living is just too much”. That off her mind she goes to talk to the Principal about the food that shouldn’t have been in the compost bin. I go with her a little worried by her statement but she is being taken to class, so I head to the office to check on media permission for some student photos I’m planning to load onto the school website.
3.30pm the bell rings and Heidi comes out of class anxiously looking for me, there are tears when I’m not instantly visible to her. We walk to the car together, Annie still talking about the compost, Heidi covering her ears and saying “be quiet Annie”, but Annie can’t be quiet, she has become fixated on the compost and everyone we meet gets told about it. I suggest to Heidi that she have a quick play on the playground equipment while I catch up with some of the school mums. This goes well for 10 minutes, then Heidi wants to go home and simply walks out of the school grounds, to the car by herself. I run after her, grabbing her school bag on the way and calling to Annie to follow us.
4-6.30pm both girls are tired and stressed after their day, they have fruit for afternoon tea and then a sandwich each, between tears and arguments, neither able to tolerate anyone else’s needs when they are so overwhelmed themselves. Once fed I send them to separate rooms with iPads for some alone play and start to prepare dinner.
6.30pm husband arrives home and food is served, most of our meals are ‘assemble it yourself’ affairs where all the ingredients are provided and each individual can choose what they prefer to eat. I ask everyone “What was the best bit of your day” to help focus on the positive aspects of the day, then “What are you looking forward to tomorrow”, this can give me a hook to lure reluctant children from bed the following morning.
7.30pm we start Heidi’s bedtime routine and hope that tonight she stays asleep. Melatonin is given, stories are read, cuddles are had and Heidi falls asleep for another night.
Annie has her sleep medicine at the same time and settles into her reading corner in her bedroom with a book. Despite being on the strong sleep medication she still manages to fight off sleep, some nights till after 11pm. We then spend the next few hours returning her to bed from various locations and activities around the house.
Husband and I try to watch TV together, do a little tidying up of the kitchen, both activities that can be interrupted to put Annie back to bed again or calm her tearful worries or meltdowns.
9pm I head to bed, it was an early morning, it may be an early morning again tomorrow. Husband stays up to continue shepherding Annie back to bed.
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Thank you for sharing your day Marita, your post opened my eyes to the complexities of living with children on the autism spectrum. All the links in this post go to Marita’s blog where she shares strategies that she uses to get through the everyday with her girls – her blog is a fabulous resource for all parents.